In January, my dad was diagnosed with Prostate Cancer (Acinar Adenocarcinoma Prostate) stage 4, with PSA of 687. PCa had reached bones but not other major organs. He was put on Abiraterone and Degarelix. In August, PSA test showed that PSA had dropped to 2.7 and there was decrease in size and PSMA avidity of Prostate lesion.
But, PSMA PET CT in August found mildly PSMA avid lesion in liver, which was not seen in the PSMA PET CT five months back. Biopsy of liver lesion mentioned Poorly Differentiated Carcinoma. Immunohistochemistry (IHC) results mentioned High grade Neuroendocrine Carcinoma (Small Cell Carcinoma). It says that tumor cells are moderately positive for CK (Interrupted membranous expression), diffusely positive for insm1 and synaptophysin, negative for NKX3.1, AR and Arginase. FDG PET CT was also done which showed mild FDG uptake in the lesion in liver.
Doctor stopped Abiraterone and asked Dad to take Chemotherapy immediately. Three rounds of Chemotherapy would be conducted after 21 days each. First round was completed two days back. where etoposide and cisplatin were administered.
I don't have much idea about cancer and its treatment and things have been moving fast - Prostate Cancer and now Small Cell Carcinoma in six months. We live in India (Delhi). Any suggestions would be highly appreciated. Also, would you think that it is better to come to US for treatment, ...?
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RindaMan
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My dad is in same boat and will have completed 6 rounds of carboplatin & etoposide after this week. Initially they said 3 rounds but he tolerated those well so they added on. However, these last rounds have been incredibly tough on my dad, who has always been healthy and active prior to this crap.
My hypothesis is that neuroendocrine cancer was hiding with prostate cancer and was diagnosed after it reached liver. Somehow, oncology profession does not seem to check properly for neuroendocrine cancer in patients with advanced PCa.
Hi - my husband's dx last November was similar to your dad's, with PSMA in Dec showing similar results. I am curious about why another PSMA was ordered for your dad after 5 months? Wondering if we need to ask for another at this point too. My husband is also on abiraterone. His last PSA was .069. Thanks - and wishing your dad all the best with his treatments.
Thank you. Dad had pain near his right shoulders and after that had a round of radiotherapy in his upper spine. A dark spot had developed in his chest after radiotherapy. Doctor asked for PSA and PSMA Pet when we consulted about the dark spot.
Based on our experience, my unsolicited advice would be to ask the doctor to check for Neuroendocrine cancer.
If you can afford it bring Your Dad here to the States.... Take him to Memorial Sloan Kettering Cancer Center a world class hospital for cancer located here in New York City NY.
Carcinoid tumors are by far the most common type of neuroendocrine tumor found in the gastrointestinal system. Other, more rare types of gastrointestinal neuroendocrine tumors include small cell carcinoma, large cell carcinoma, and pancreatic neuroendocrine tumors, which arise in the islet cells of the pancreas.
Doctors may diagnose and treat neuroendocrine tumors according to the types of cells involved, the appearance of the tumor cells under the microscope, and their location in the body.
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That is what I thought too. I got dad's prostate and liver biopsies reviewed at MSKCC in NY. They confirmed Prostate and High Grade Neuroendocrine Cancers but did not find evidence that the source of Neuro-Endocrine cancer is in his prostate. These could be two parallel cancers in his body.
That is what IHC (immunohistochemistry) analysis does. They stain the tissue with antibodies that only show up for particular origins of cancer. Ask your oncologist.
An oncologist asked me to get the NGS test of the primary Prostate biopsy done to confirm if Neuroendocrine Cancer originated from Prostate Cancer. Planning to get that done.
I already got NGS done on Dad’s liver biopsy (Neuroendocrine Carcinoma). The oncologist said that now if I get an NGS done on the original prostate biopsy then they can say convincingly whether prostate is the source of origin of Neuroendocrine cancer. Does this sound ok?
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